About me

From the AVM SURVIVORS web site: "Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body".
I am currently undergoing embolizations with Dr. Wayne Yakes @ the Swedish Medical Center in Englewood, CO every 8 weeks! Our lives are either planning a procedure, having a procedure or recovering from a procedure! The trick lately seems to be to keep the "bleeds" under control! My husband Mark is also my caregiver! He has become an expert wound care therapist, not to mention all around bundle of being just exactly what I need to get through the day and this ordeal we call an AVM! I recently finished 10 years of Embolizations w/Dr. Yakes and am finally ready for my next stage - Debulking and reconstructive surgery w/Dr. Robinson in CO - he is a dentist and plastic surgeon! Best advice to an avm patient - Stay positive and surround yourself with supportive people! Lots of faith, prayer and love are all crucial too!

Friday, July 25, 2014

Hi everyone! It's that time again - going to write all about our adventures after this last trip to CO! Celia was starting this trip with me, and as soon as we walked into the airport to the SouthWest counter, I get excited greetings from one of the ladies behind the ticket counter! Merrilee is so supportive, I asked if she would take a photo with me to put in my blog!

Also was recognized by security @ metal detector - the CC Airport employees have gotten used to seeing us so often!
We arrive in CO about 3:30 p.m. and head to the car rental place. Once we got the car, we headed to the hospital so I could get checked in! Since it was late in the afternoon, Admitting was closed and Dr. Yakes office was
too and his patient coordinator told us I would be a direct admit through ER. First we made a quick stop @ Safeway for some snacks before I get stuck in the hospital!

Celia took this photo w/her I-phone - the view from my room!
Soon as we put the luggage down, Celia stayed a bit, but I know she had lots to do as well, so I told her I'd be fine on my own. I was on the 7 North as usual and I'm familiar with the nurses and techs! Celia had dinner @ The Copper Pot, across the street from the hospital then went to check in @ the hotel.
I had plenty to keep me entertained - Celia surprised me with the Pope book and one of my co-workers had lent me a book called The Breath of God - turns out I had forgotten I own it and it's in my Nook!

I'm also re-reading the Diana Gabaldon series of books, as the first one called Outlander will be a series on STARZ next month! I'm about half finished with the second book in the series called Dragonfly in Amber.

So the original plan had been for me to get admitted Monday evening, then be taken to have an angiogram Tuesday to see if there was any trace of avm left. Lately I had been experiencing blood running down the back of my throat and I was afraid that would happen while I was under anesthesia. I was talking to Dr. Yakes, P.A., Kelly about it - and she said as long as the inner cuff was inflated, then I wouldn't have to worry about blood going down into my lungs. The plan was to see what the angiogram showed with the possibility that Dr. Yakes would do an embolization if there was a trace of avm left. I'm supposed to be "done" and this was for a routine check up after being in the completed stage. I hadn't had anything to eat/drink since Monday evening and I wasn't taken in for the angiogram until 4 p.m. Tuesday! Luckily Kelly told one of the nurses to go ahead and let me have some clear juices and jello until 10:00 am. so I would have some food in my system! I was now in OR and had just moved over to the bed where the procedure would begin and I could tell I had blood coming down the back of my throat. (Here is a good shot of Dr. Yakes right before he started my embolization)!

I sat up until it passed and next thing you know, I'm waking up in my room. I heard Dr.Yakes used 15 cc's of alcohol injected in to the left side of my face and even used some coils! I was struggling to breathe when I was waking up from anesthesia - like I couldn't completely draw a full breath, only shallow breathing. I kept praying that the feeling would go away, it was hard to talk - turns out because that balloon on the inside of my trache had not been deflated! I know I mentioned it to Kelly before going to surgery - but maybe they kept it inflated in case I had more bleeding so it wouldn't go into my lungs. In either case, I was also not able to get out of bed until 11:00 p.m. to make sure the groin stick from the angiogram was healed enough.

Meanwhile part B of the plan on this trip was that I would have the debulking surgery with Dr. Robinson the following morning, Wednesday. The nurse answered the phone when Dr. Robinson called and Celia was in the room with me as well - and I made it clear that there was no way I was having another surgery right after the one I just got out of! I was so uncomfortable and wondered why I wasn't getting Decadron (steroid) in my IV to reduce the swelling from the alcohol Dr. Yakes used! I asked 2 different nurses to check my chart and make sure they hadn't overlooked the order to give me that Decadron I needed! It was hard to swallow, much less try to talk! About 4:00 a.m. one of the respiratory techs came in and I asked her if the balloon inside my trache was still inflated. She said it was and I talked her into deflating it so I could start to breath better! After she left the room, I got up and got my own Prednisone (steroid) that I had with me - just had to get that swelling down inside my mouth!
Meanwhile I coughed a couple of times and started more bleeding - had about 3 of those episodes right after surgery! I would end up spitting out blood clots in the sink. Ugh! Can you imagine if I would have had that scheduled surgery and having all the bleeding right after the first surgery? Apparently these bleeds I was having after surgery were the result of the alcohol embolization that Dr. Yakes did. It was strange because I went in to have the bleeding down my throat stopped - yet I still bled about 4 times after the surgery. Guess that area needed time to heal - had a couple bleeding incidents once I got home, but they were less than what I had after the procedure while I was still in the hospital.
First thing Wednesday morning, Dr. Yakes and Dr. Robinson came into my room to find out how I was feeling and why I had changed my mind about the debulking surgery (on this trip). Dr. Yakes was telling me that I was already scheduled and people were expecting me in OR, etc. I could barely talk and was still struggling to breathe well, that I just couldn't see going under again so soon and possible wake up even more miserable with my head all wrapped in bandages and a tube on the side of my neck to remove fluids. Celia hadn't gotten to the room yet from her hotel, otherwise I could have gotten a great shot of both doctors! It's a huge production trying to put these appts. together - especially when it involved two very busy docs! I managed to ask Dr. Yakes why I wasn't getting any Decadron and he said there was an order in my chart! We later found out that there was two charts for me, the one under Dr. Yakes name and the one under Dr. Robinsons name! The latter chart didn't have an order for Decadron but the first chart did, but that's not the one they were looking at! Finally Mandi and Kelly came in my room and told me they had straightened out the problem and would begin giving me Decadron through the IV. Most of Wednesday I was still struggling to swallow and breathe - and Celia had agreed that it wasn't a good idea to have had that second surgery. She changed my flight to be able to leave with her on Thursday - otherwise my ticket back home wasn't until July 29, the following Tuesday! Mark was going to fly in on Saturday and then knew if I had the debulking surgery, to expect to be in the hospital until Sunday. Then take a couple days extra in CO in case I needed anything from the doctors.
To boot, my brother-in-law Jim and his wife Shelley would not be able to take our kiddos, since one of their furry kids was sick. So the week before this trip, I checked out a couple of places where we could board the kids! Went to the place on the island where Celia boards her pets, but they weren't open on Saturdays and that's the day Mark would have dropped them off! I had already checked out Barkaritaville Pet Resort, but took Mark a couple days later so he could get a tour.

The kids were up on their immunizations and luckily Mark found that paper work - it was done through the City Vet. We still ended up taking Hanz and Bella to our regular vet to get the kennel cough and flu shot and they needed a fecal exam! Oy vey!

Back to my adventures in the hospital .... my favorite tech, Alex came in my room! Celia told him, "glad you came in to see her, this is the first time she's smiled today"!

He's such a cutie - he plays along when the nurses and I tell him he reminds us of Taylor Lautner in the movie Twilight, so he'll sign in on the dry eraser board as "Taylor". Poor kid, shortly after he came in and gave me a hug, I started having a bleeding episode! He ended up helping on of the nurses put me in a new gown since I got blood all over the front of the one I wearing! Those things have so many snaps, the nurse and Alex were able to put a new hospital gown on me and let me keep a sense of modesty! Ha, ha!

You know after I got out of my first procedure Tuesday night - I never got to sleep. The following day (Wed.) Kelly found out I never got to sleep, so she ordered something to knock me out - Celia says I slept hard for about an hour - I know after that I didn't sleep @ all until we checked out of the hospital!

Dr. Robinson had asked if I was staying in town long enough where maybe I would change my mind and go ahead with the surgery with him. You know, if I had gone in for that angiogram early in the morning and only gotten say, 5 cc's of alcohol instead of 15 and no coils like Dr. Yakes used - if that darned ballon had been deflated and I had been getting the Decadron, I might have been able to have that second surgery that was planned - but I was so miserable - there was just no way I could see myself going under anesthesia again while I was struggling to catch my breath!

So, Celia was able to change my flight and cancel Marks, so he wasn't going to have to fly to CO and that meant we wouldn't have to board the kids! Yay!

Here's my Velcro baby Hanz, sleeping with dad since mommy was in CO! Here's a cute shot of Bella, she likes sleeping in her original baby bed while her head hangs off the end of it!

So now we were able to get home Thursday evening (5 days early for me)! I missed my babies so much! The nurses @ Swedish ask for Hanz and Bella because they know how much they mean to me! Most of them have pets too, so it's nice sharing our furry kids with each other!
Ok, I'm going to stop blogging right now - it's too quiet around here, but I have a feeling Mark is in bed and both dogs are with him! I'm sure I'll remember something else about the trip and add it later!
Until then, thank you all for your prayers, love and support! Got a lot of positive comments from my Facebook friends on my avm t-shirt! Ok, take care and hope all is well with all of you! I'm guessing I'll return to CO in a month or two to start that debulking surgery. We'll see.
Thanks for keeping in touch!
Cyndi
P.S. I just have to add that I wouldn't be able to handle this journey without all of you! I am surrounded with an incredible support system, between my family, friends and co-workers! Thank you for understanding that I'm just not functioning @ my best right now, but we're getting closer to being there! So much prayer, faith and love ease this journey for me a bit - because have no doubt, it's been a very rough road for such a long time!
My husband Mark especially is a saint! Well.... for the most part! :> ) Mark takes super care of me and knows exactly what to do to make me feel better! He works all day, then comes home to take care of me, make dinner and take care of our furry kids, Hanz and Bella! Guess I'd better finish this so I can get my things ready and head to work! Will keep you posted!

Just found this photo of Dr. Yakes on Facebook - that is so cool! We'll call him Yoda Yakes! Dr. Y has a wonderful bedside manner - makes everyone feel so special and well cared for!